!@#$%^&*!@#$!@#

Hollis had her first seizure since the surgery today. It was a tonic-clonic (grand mal) and about 2 minutes long. She was was very irritable, confused and tired afterward. We're all pretty deflated right now. I'll be calling the doc tomorrow to see what we do next.

The trouble with meds

If things continue to go as well as they are with Hollis's seizures, I am really hoping that we can reduce the number of medications she takes within a year's time. Giving her meds is a nightmare for her and for us. We just stayed in the habit of giving her the sprinkle (capsule contents) or tablet form of the medications, because when she was on the ketogenic diet we couldn't use the liquid form: the carbohydrate content is too high in the syrup bases of most drugs. It also proved easier (initially) to give her the meds on a teaspoon of baby food than what I can recall of giving liquid meds like Tylenol, which she just coughed right back at us. Well, now she puts up such a fight for taking this tiny amount of baby food with the meds, that all of us end up sweating, screaming, crying and usually covered in bananas and Depakote and Topamax sprinkles. She even knows the sound of the pill bottles and tries to hide when she knows they are coming. I have yet to figure out a better method of giving the meds, and we have tried a bunch: sticking it in food (she finds a way to avoid that piece of food), putting it in a syringe with water (sticks to side), using something with sticky texture like peanut butter (makes her gag), etc. My creativity has run out.

Article in NYT - Epilepsy Surgery

Here's an article in the New York Times with an interview of Hollis's neurosurgeon, Dr. Joseph Madsen. I love that even in the interview, you get a sense of how much of a "teacher" he is: he spent a good deal of time with us, explaining the structure of the brain, what each area does, and the details of how the surgery is performed. We are so fortunate to have people like him on Hollis's medical team.

3 weeks!

We're hesitant to say things like this, because we're a little superstitious, but Hollis hasn't had any seizures for over 3 weeks, since her hemispherectomy! This is as long as she's ever gone without a seizure in her entire life! She is still on her meds, and still has the Vagus Nerve Stimulator running high, so it could be the combination of everything, but we're thrilled with the outcome, any way we get it.

Coincidence?

As I've mentioned in some previous posts, Hollis has been eating extremely well since the week after the surgery. Eating has been a huge problem for her since about this time last year. She suddenly decided to stop eating altogether for about 2 weeks in July 2007, and when we finally were able to get her to resume, she would only eat a few items: pepperoni and sour cream and onion potato chips were her staples. Because she ate so little and because it had almost no nutritional value, she lost about 10 pounds in a month's time, which was equivalent to 20% of her starting weight - and, she was not a chubby kid to start with. She also lost about half her hair.

We always assumed it was related to one of her seizure meds, Topamax, which has a known side effect of decreased appetite. Unfortunately, this happens to be the most effective medicine she uses, as we found out when we took her off the Topamax for the surgery evaluation/seizure monitoring, and she promptly had 55 seizures in one day. So we were kind of stuck.

What I never really considered was the constant seizure activity she was having could have been making her nauseous. There are many different symptoms that people can suffer related to their seizures, (a list is available here), but because Hollis is nonverbal, the only symptoms we were positive she had was the exhaustion and post-seizure behavior of anger and frustration. Perhaps now, without all the excess electrical activity going on, Hollis's tummy is feeling better.

A bit of history

Many of you coming to the blog already may be familiar with Hollis's history, and why we had to go through this radical surgery, but for the folks just swinging through, I thought I'd give a little backstory to my brave girl.

Hollis was born with her seizures, due to a stroke she suffered while I was pregnant with her. We did not know she had the stroke at the time, but found out after she stopped hitting her milestones at about 4 months. The pediatrician we had at that time told us to wait and see what happened until 6 months. She became progressively more limited on her right side, and her arm tightened into a bicep curl and fist: we knew something wasn't right.


At seven months, she had her first MRI, and was diagnosed with a stroke, which started from a clot from her middle cerebral artery. The stroke more or less destroyed left side of her brain, leaving it scarred, and much smaller than the right side. This brain damage is what caused her seizures, left her very limited on her right side, with global developmental delays.



Hollis's seizures started off as "drop attacks", or atonic seizures, where the body quickly loses all tone, much like what would happen if a robot was switched off. If standing, she would fall, and crash into anything in her way. These drop attacks are very short, but extremely forceful. She has had more than her share of black eyes and bumps on the head in her 8 years. The seizures then progressed to tonic (stiffening), lasting about 30 seconds, and then tonic-clonic (the grand mal seizure most folks are familiar with) lasting up to 90 seconds. What started off with bumps on the head progressed into ambulance rides and multiple emergency room visits for clusters of seizures drugs couldn't break up.

We have gone through many different treatments including 7 anti-epileptic drugs, the ketogenic diet, and the vagus nerve stimulator. These made a dent in the number of seizures, which were at about 40-50 a day, but she was still having 6 - 12 a day. We eventually got to the point where surgery was the final option, and of course, we had been trying to avoid it because it is terrifying to think of putting a child through such an operation. At our consults for whether she'd be a candidate for epilepsy surgery, her neurologists and neurosurgeon said despite the radicality of the surgery, we'd be asking ourselves afterward why we didn't consider it sooner. I don't know that we would have changed our timeline, but we are definitely happy with the results we've seen so far!

Included are some of our favorite pictures of our girl, at 18 months, four years and seven years. The last photo summarizes Hollis's personality to a "T": "sassy"!

Here are two great links to find out more about epilepsy and types of seizures and syndromes. Below that is a link about childhood stroke.

www.epilepsyfoundation.org

www.epilepsy.com

www.chasa.org

It takes a village...

You've probably heard of the expression of "It takes a village to raise a child", and in Hollis's case, we REALLY need a village! Both sets of grandparents have been up to help with the recovery, both in the hospital and back at home. Her, PCA (personal care attendant), Katie, and her boyfriend Brendan, and their friend, Alan came to the hospital to visit, and have been helping us at home too. We couldn't do it without all of them, and we love them all so much! I've included some pictures of our "village".

How Dunkin Donuts saved our family

Today, despite being the homecoming, was a "down" day for Mom and Dad. Hollis was not eating, under any circumstances, and wasn't interested in drinking either. She slept through most of the day, and when awake, was very angry with everyone. We got to about 6:30, and decided to take her for a stroller ride, which again, was not particularly well-received, but she caught sight of the car, and pointed, indicating that she wanted a ride (a pre-surgery favorite activity).

We took a short ride, and stopped at Dunkin Donuts to get Mom a coffee (another pre-surgery favorite), and we also got Hollis a blueberry muffin, in hopes it might entice her. She grabbed the bag from Daddy, and started digging in, and then pointed to the coffee (yes, my 8 year old loves coffee, and I'm not ashamed to admit it). It was such a huge thing to get her to eat, and a relief for us!

She was exhausted by the time we got home, so we put her to bed. At 8:00 she was due for more meds, so I gave them to her and said how happy I was to have her home, and asked if she was happy to be home: she responded with "Yay", and I just broke down into tears. It is such a relief to see even the small parts of Hollis's presurgery personality emerging bit by bit. The stress of seeing her so weak and unlike herself has been excruciating. Her recovery is coming along slowly, but it is definitely moving in the right direction.

Here is a video of Hollis with the music therapist as referenced in previous posts. The pictures are one of the windows that Grandma decorated for the 2 rooms that Hollis stayed in. I think Children's hospital wanted to hire her! The other picture is Mom and Hollis dancing to "Holly Holy" by Neil Diamond at the jukebox last night.

Hollis's neurosurgeon and one of his success stories

Hollis's neurosurgeon is Joseph Madsen, M.D., at Children's Hospital in Boston. He is a very kind man, and extremely dedicated to his "kids". Here is a link to one of his success stories.

http://www.childrenshospital.org/dream/dream_fall07/extreme_measures.html

Surgery description

Hollis is scheduled to have a "functional hemispherectomy", rather than an "anatomical hemispherectomy". The primary difference is that with a functional, the hemisphere that is causing the seizures is left in place, and is neurologically disconnected from the healthy hemisphere. With the anatomical, the whole hemisphere is removed, leaving a space in the head which fills with cerebrospinal fluid. Here is a link to Cleveland Clinic's description of the procedure.


http://my.clevelandclinic.org/services/functional_hemispherectomy/hic_functional_hemispherectomy.aspx

Getting in as much fun before surgery as possible

Hollis has had a very full summer vacation thanks to her PCA, Katie. They've been to the beach, to parks, in swimming pools, on trampolines, and keeping up with a very busy social calendar visiting friends. Tomorrow is her pre-op appointment, where we'll make sure she is healthy and get the three ring circus introduction to her medical team.